September 03, 2015

The Guessing Game

"What to Expect the First Year," and it's sequel "What to Expect in Toddler Years" are great books -- except when you live with a Side of Special.

The handouts that the doctors give you at the annual wellness checkups for your child that list current and and anticipated developmental milestones are helpful -- unless you are there with your special child, in which case not a single bullet point on that handout applies.

There is not an instruction manual for Special.

There is not an annual handout from the doctor listing expected behaviors, advancements and growth.

There is not a handbook, no "What to Expect" series.

There is nothing, nada, zip.

Life with a Side of Special is a crapshoot.

It makes our life a guessing game.

What year will be the year that my back will actually start breaking in efforts to lift Bridger in the tub and we will need to begin bathroom modifications for a roll-in shower?

At what rate will he grow which will necessitate upsizing the wheelchair which might mean upsizing my van -- but the type of van is completely variable depending on what his developing skills are that determines what type of wheelchair?

Do we need to have $10,000 for our out of pocket expenses in January -- or might we be able to make it until March or April before forking out our in-network max for the year?

How many thousands (or tens of thousands) do we need to save for Bridger's out-of-network, out-of-pocket expenses this year?

How long can we drive in the car before epic screaming meltdowns begin? If we invest in $100 of new movies or toys would that buy us an extra 2 hours of driving time?

Is Bridger capable of flipping over the railing yet should he pull himself up to stand? Will he be capable of pulling to stand next month? Do I dare take my eyes off him for a minute in the house just in case he is? What about his bed railings? Do I launch the 6 month process of pursuing a new higher bed just in case?

What does the field look like that the softball game is on this week? {Pushing a stroller with an 83 pounder is much different than pushing a baby stroller.} Does it have a smooth path that I can maneuver his standard pushchair on that has a more protective canopy to keep Bridger from seizing in the sun or is there not a good enough path for the pushchair therefore I bring the offroad stroller that allows me to at least get to the field but doesn't provide as good of sun protection and put us at risk for seizing?

What commuter car do we get next for Alan? It has to a hybrid. It has to be able to fit Bridger's pushchair. How much do I anticipate Bridger will grow during the course of the 6-7 years that we will have Alan's next car? What are the dimensions of the various pushchairs that would accommodate my anticipated growth and will they fit in the options of hybrid commuter cars?

These are just a few questions included in My Special Guessing Game of the past 6 months.

There is no way to predict. We make guesses based on our history and our experience of the past whopping eight years -- but 8 years hardly qualifies you to be a successful in The Guessing Game.

Sometimes we guess wrong.

We knew we needed a large van for a wheelchair. We thought we would save $40,000 by buying a used van and modifying it ourselves. It worked, sort-of. The big beasty van was a traveler's dream for the other children with the cushy captains chairs and 32" hdtv. But as big as it was, it wasn't big enough to accommodate the upsize of wheelchair. We also didn't forecast that Bridger would have a tremendous rate of growth over the past year. The kiddo who was not even on the charts for the first several years of his life is now projected to be 6'4". Hauling that big frame in and out of his bed/car/wheelchair/shower chair will be an exciting show to watch in the coming years.

Just to get Bridger into the car was a physically exhausting feat. We would raise him up in the lift, but then once inside we would have to lift him out of his chair and forward through the narrow aisle to transfer him into a seat since there was not room to negotiate the tie downs for the wheelchair. That lifting transfer had to be performed while crouched over 45 degrees due to the ceiling height, which is excruciating on the back. We then had to move the 40 pound wheelchair over to flip down the jump seat to make seating accommodations for everyone, and move the carseat back into the jumpseat. The whole process was reversed to exit the car. This done several times at a pop if we had more than one place we had to go and made nearly impossible if Bridger wasn't agreeable at the moment. Even after one round of this you are in a lathered sweat. With my compromised back, I was so grateful when the kids or Alan were there to help (although the fear of compromising their backs is always present). They were a well-oiled machine entering and exiting the van.

We are writing the our own special handbook called "Trial and Error".Our van trial proved an error. It is tough to swallow the errors. The trials represent hours and hours of studying, researching, money spent and a hope of making life a fraction of a percent easier. Realizing the error is swallowing all of that and sadly realizing that you just don't know what to do in this journey because there isn't any book, manual, form or understanding that anyone can provide that will make views of even the near future anything clearer than mud.

The purpose of our trip across country this summer was to have fun, drop Lance off at Scout Camp with his uncle, go on our All Girls Getaway -- but it was also to sell our van to a buyer out west.

The kids and I took our final photo along side our big black beast, and then we watched it drive off into the mountains and we flew home.

I cried.

Who cries at watching a Ford E250 Super Duty high top extended van drive away?

Driving away was my attempts to make the right moves for our family, my efforts to try to guess all of the unknowns accurately, my hope to make life a little easier that just didn't.

With the hundreds of unknowns that we have successfully navigated, anticipated and provided for, this one we didn't quite guess right.

It was a fabulously fun two years with the van - traveling in luxurious conditions in two cross country road trips, a beach trip and numerous weekend trips throughout the east.

But we said good-bye.

A newer, larger, taller, longer, less luxurious (consequently more floor space), lift with bolt in for the chair (instead of tie downs) van is coming down the pike towards us.